Thirty Days and Waiting

Good morning! We just rounded, and the doctors have cleared us to leave this morning!  Otto is very excited to come home.  We, too, are excited for this!  His leukemia cutis continues to head towards clearing his body.  This is a short, but sweet post, for we are heading out soon! With love and gratitude, Mark, Leigh, Otto, Tess and Lulu

Today was a good day. The cutis that had developed is now starting to decrease.  This is a good sign that the awakened leukemia cells are being destroyed and taken care of. He continues to tolerate the chemo well. This means we are still scheduled to leave tomorrow morning. Afterwards, we will recoup at home with visits here and there to Clinic while we wait for counts to deplete then improve. As always, thank you for all the support. These bumps in the road have become less frustrating because of all the love and support we have received. Mark, Leigh, Otto, Tess and Lulu

Good morning! Many of you have been wondering how you can go about getting tested to see if you could help Otto in the area of bone marrow donations.  We thank you so much for your willingness to help!  We appreciate your interest in learning how to get this done. If you would like to get swabbed and join the registry, I encourage you to go to the Be the Match website ( www.bethematch.org ).  This cheek swab takes literally 1 minute and 30 secs to complete.  Isn't that a crazy thought?  Just by rubbing your inner cheeks with the given Q-tips, you could potentially save a life! People who would like to pursue this journey will need to understand that their results cannot be directed to Otto.  Instead, your swab will be available to anyone on the national registry.  Does this include Otto?  Technically it does.  However, our team here at Yale has already collected a pool of candidates who could potentially be a 100% match.  So, by th...

Sorry for the long delay in posting.  It's been an interesting, yet fun last few days. We are now Day 4 into chemo.  Otto is tolerating everything really well.  We are lucky once again to have one day time chemo infusion, with the others occurring when he is sleeping.  This makes life a little easier, for he is not tied to a machine all day.  All side effects are under control with the usual meds.  There has been no need for additional meds like last time. We received word back that there is no disease in his marrow.  This is a great thing.  Due to this, we may be eligible to leave after the last day of chemo, so Otto can recoup at home.    This would be a fantastic situation, for if this is not the case, he will be inpatient for another 20 days.  We can see that the chemo is starting to help the leukemia cutis decrease.  However, this is a process that will occur over time beyond the last day of Round 4.  We were...

Hi everyone.   Yesterday went well, all considering.  Otto was able to get out in the morning for one last round of golf before heading in for his usual bone marrow biopsy and lumbar puncture.  He had a great time with everyone.   His procedures that afternoon went well.  There were no major hiccups and we are now awaiting the results which should come to us Friday afternoon.  If the bone marrow is disease free, then we are here for the chemo days.  If there is disease present in the marrow, then we will be in the hospital until his counts recover (anywhere between 25 to 30 plus days).  We are praying hard for no disease, but since the leukemia cutis is present, you never know.   Today starts Round 4 of chemo commencing this afternoon.  We are lucky in the sense that one treatment will happen during the daytime and the remaining treatments will occur when he is sleeping.  We think this is better from a mental standpoint. ...

This long journey we’ve been on has had so many twists and turns, surprises and shockers along the way. Today we have hit a bump, but it’s one we will get over. Otto found out that his leukemia has returned. Within his body, there have been some sleeper cells that have awaken. These cells have been rapidly dividing now leaving pockets under his skin.  Although this doesn’t change the meds involved his his next round of chemo, it does change the plan. Now he needs a bone marrow transplant.  More of the plan will be discussed as we move forward. Otto will be heading to Yale tomorrow to be admitted as well as have a bone marrow biopsy/lumbar puncture. The following day will be the start of Round 4. On a positive note, we also had testing that determined his lung infection has cleared up. When bad news appears, it’s soon followed by something good. It’s all about the balance. It’s upsetting to know that the cancer has returned, but we know we are going to get through this. ...

A warm hello to you all! Otto has been doing well. We are heading to Yale tomorrow for a repeat CT scan and an echocardiogram. We are also going to be hearing about his dermatology biopsy findings. We are praying that all will be good. Any news, however, will be greeted with strength and positivity. Please continue to pray for our fighter and family. So much love, Mark, Leigh, Otto, Tess and Lulu